Wow took me a long time to realize i forgot to spit out the gallery from last Saturday at Long Grove. Here it is.

I have scheduled our second episode in the SID series.

I am officially dropped out of high school as of today. This is actually ironically a good thing. See in February 2007 I had to stop going to school all together since it was getting too hard medically. This resulted in such a lag that if I were to start home school with them now it would take me up to six more years to complete high school. Me my doctors and mom all decided I am too damn smart for this crap, and thus we dropped me out today. I will be doing a G.E.D this year or early next year and then heading to college to become a wheelchair professional.

Tomorrow after my pulmonary appointment we hopefully will get my Baclofen pump cranked up again. Can’t wait till we hit that slobbering like I got severe Cerebral Palsy state, should be really good feeling for me. Maybe one of these days I can get my hands on a programmer and kick it into zero muscle tone mode at night when I want to sleep, after all atonic (muscle tone drop) seizures make me relaxed and sleepy. Or I could leave my pump in that zero muscle tone mode all the time, it’d be definitely impossible to have any type of spasticity like that.

We are finally going into the office this Wednesday to figure out what type of system we will use from now on to clear the secretions from my lungs. We also have to figure something out since dry air from the heater in our van definitely proved to be bad today being it was chilly, I don’t know if we need to get an automotive humidification system. We will find out more then.

Today we went and saw my rehab physician to get a new pain medication. Her original prospect of Oxycodone was shot to pieces being that it is highly similar to Norco, therefore we had to be switched to Morphine which we have started using today. I am really happy with it since it is the same stuff I get in the hospital, works great and does not cause problems.

I have scheduled our second episode in the SID series.

I have scheduled our second episode in the SID series.

Smell that... beautiful smell? That my friends is new G-Tube smell. I had my new 3.0 cm MIC-KEY* tube inserted today to replace my old 2.7 cm MIC-KEY* tube that had sprung a leak in the balloon making it loose. We are hoping this tube will help with my granulation tissue buildup by removing pressure from the site. If anyone wants a drink we got my very own home brew on tap, freshly concocted from stomach acid and whatever else is in there. Only $3.99 a glass.

Ok, I will stop making the bad jokes.

Yesterday my neurosurgeon Dr. O’Leary took out the stitches from my spinal incision that required re-closure surgery two weeks ago. His nurse tried to do it but was having a hard time finding the knots to cut and so he himself came in and did it himself with much less pain than I expected. Although midway in the procedure it hurt pretty bad and I said “you bastard!”, he said for that I am going to make sure to pull on the next one real slooowwww. He is a really fun guy to be around, hehe. I gave him a hug when the procedure was done as I usually do for all of my doctors.

At my parents church my dad photographed this sign that Joanne B. one of the board members made to draw visitors to the site. This should hopefully help get word out. Either way it is a very cool thing she did even though I am non attending.

I have manually verified that this episode is working. That is why it took me so long to get it posted here. For now all episodes are going to be manually verified since Talkshoe is giving us a lot of technical issues these days.

Hosted by: Alin S
Title: EPISODE13 - Disabilities - Sensory Integration DIsorder 1
Time: 09/19/2008 09:00 PM EDT
Episode Notes: This is a REALLY special episode, or should I say series! We will be starting a three week series on sensory integration disorder, we will mostly focus on methods of coping with it as it has already been described in Episode 1 however I will reiterate the description in short. This episode is rated R for heavy profanity.

I have added links to http://www.shidash.com and http://shidash.blogspot.com since she has linked to me and is also going to be a regular staff member of our podcast.

The big photo move to the new MobileMe gallery has been canceled for now. I have decided that interoperability between OS’s and accessibility along with simplicity of navigation are heavily key features to my website and that the MobileMe gallery is too mcuh eye candy without the same or better features than what we have right now. Therefore the move is canceled and the photos will remain as is in their current location at http://alinssite.iguido.com/gallery

One of our new caretakers who we have known forever and is codenamed Uncle Greg told his daughter Sarah that he thought she would be interested in me a few days ago. Apparently she was interested enough to come over today, we had a good deal of fun and I took her identification picture and contact information, making it official that she is a friend of mine. I think she will be a great friend to have. :)

Well, it looks like I have a new friend. She is mainly on youtube by the name of roadbikemum and works as a RN specializing in management of chronic diseases like mine. She donated 100 dollars to the Alin S fund to help keep things going like clockwork for us. She will continue to be a great resource to our community. In the UK we might meet up, when i am there for my big Make A Wish excursion.

Today we went and saw my neurosurgeon Dr. Shaun O’Leary for my one week follow up after the repair surgerie’s. We were supposed to see him last week but saw him early in the operating room. Today he checked everything and also the Medtronic tecnician was there and so they decided to kick up the dose on my pump 10 mcg, so right now I am getting approximately 70 mcg per day, I think. Next week we go back to get the stitches taken out of my back and hopefully it will stay closed this time! They will also kick the pump up by 20 mcg more. Their plan is to get me up to a state of drooling all over myself with zero muscle tone and then slowly pulling it back till I regain ability to move and speak.

I have been receiving loads of questions about the upcoming Make a Wish trip. Therefore I am making this blog post to answer them so that we can hopefully cut down on the repetition of the same questions in my E-Mail, not that I don’t love getting E-Mail but the same questions over and over can get a bit... redundant, hehe.

Our original Make a Wish plan was to send me to New York to ring the opening bell on the New York Stock Exchange, due to restrictions placed after 9/11 and the fact that it is all scheduled out as far as next year we decided that going to new york is not a viable wish. Therefore my back up and probably should have been primary wash was to travel to England to visit my many friends and take a look around the place that might become my future home. We are also going to ride the chunnel for a day trip to Paris, I am more excited about the really fast train than going to Paris since I have no friends there. We will be spending eight days in England not including the two days required for travel into England and back.

This blog will be updated when we receive travel itinerary information, when we receive our room number the address and room number of the hotel will be prominently displayed on the front page of the website. VISITORS ARE WELCOME, THERE WILL BE SPECIAL DAYS DEDICATED FOR VISITATION.

Oh and Bob the man on the left donated $50 dollars recently within the last few days, so thanks dude!

The photo move is continuing to be delayed due to the fact that I am so busy with other things. I am still working on it, it is just running slowly.

I got some new toys over this weekend and today. On Saturday I got my new 32GB iPod touch which I sold my iPhone for. I also sold a clarinet I had from band a long time ago and decided to use some of that money to get a cable to hook up my laptop to my 42” 1080i HDTV. I wrote this entire blog post on said 42” HDTV and it was awesome. My new iPod touch is barely full with only about 2.5 GB of stuff on it, majority being photos. I do not listen to huge amounts of music is the issue, but we will watch that iPod touch fill up with photos pretty fast, especially with the trip to England coming. I am sure I will be taking pictures of EVERYTHING.

I noticed that in a few recent posts the images were replaced with something not intended for that post from an older post. This was found to be a filename “crosswire” error resulting in an older file being loaded with priority. New image files from now on will have a random name generated for them.

See that chart of the NYSE Bullish Percent Index?

Due to my autism I tend to equate my emotion and health status and everything into a stock market index which I named the ASX. Today it crashed because of a faulty painkiller that I got from the pharmacy, we tried this painkiller named Norco in the hospital which worked much better for me than my old painkiller Fentanyl which came in a patch that did not stick to my skin and did not absorb correctly. Oddly this new Norco medication worked very well in the hospital, we are suspecting that it may have something to do with the brand I am currently using. On Monday I am going to call the hospital and find out the exact brand they are using. I am very sensitive to drugs, and even the slightest differences from one generic to another can make it or break it for me.

I am officially home from the hospital as of 6:00 PM today. The Sterile Seroma is still very large but the hospital finds it safe for me to be home. I am glad to be home. I have connected with more of the nurses and employees at the hospital. Everyone there loves me therefore a lot of them subscribe to this website. The new back on my wheelchair is really really comfortable. I can’t wait till I get the new seat cushion and headrest, then the chair will be perfect!

I have started a shop at cafepress.com which will sell one theme per month. The shop will help get more donations by marking up every product exactly 5 dollars. Things are still extremely economical even with the mark up. Click the picture above or the picture in the sidebar to go there. This months theme is shown below on an example T-Shirt. The theme will change when I feel like it.

Scott L. Schwartz who is a famous actor visited my room today. He has been in Spider Man 3, Buffy the Vampire Slayer, Fire Down Below, and Ocean’s 11 and a few other movies. I recognize him from Buffy the Vampire Slayer especially. He is a very caring and cute guy who apparently likes me. After he left Sammy and his trainer came in and visited us, he is a labrador retriever poodle mix also known as a labradoodle. He has very soft fur and does not bark which is a good thing. Compared to our dog he is huge.

The doctors are in agreement with my theory that the current back on my wheelchair has caused the wound to reopen the first time and possibly caused the Sterile Seroma to occur. I will be kept in the hospital at least until Friday when RehabTech will be coming to the hospital to install my new wheelchair back that is being ordered and shipped overnight tomorrow to arrive on Friday. This will result in a $500 dollar out of pocket expense that is going to put a real dent in our account, we need help to replenish the account so please donate.

As I do with all new equipment I will make sure to get some pictures, sooner or later.

At 11:00 PM yesterday I was admitted to the E.R as the doctor ordered with a Baclofen pump site quickly filling with fluid, it was a surgical emergency, the doctor was afraid I might have sepsis and ordered about ten or more vials of blood samples to be sent to the lab one of which was a type and cross in the event I need as transfusion. These tests were run on an IV line to prevent me from having to get stuck twice. After this they hooked me up to the monitor’s and set it up to take my blood pressure every ten minutes which I had a very comfortable Neoprene cuff. We then waited for a bit and they suddenly brought in a digital X-Ray machine, by this time I was slightly more relaxed having a warm PVC lead apron on me for a bit while they took some X-Rays. Then someone came and took an EKG and about 30 minutes after that I was whisked off to the OR. In the surgey they went in again and made a slight lengthening and checked the catheter and also checked into what was up with the major swelling. They found out that the swelling is in fact a Sterile Seroma which is a collection of sterile fluids, mine contains antibiotic irrigation which slowly, or quickly migrated from the spinal area to the pump area along with blood plasma. The Sterile Seroma will take a few days to heal. Next week we go to the neurosurgeon for a follow up to check everything.

We are heading back to the hospital within the next hour for another emergency surgery. This surgery will be explorative to find and fix the problems. I will be admitted to the hospital for an unknown amount of time. I will keep you all posted as soon as I am able to use the computer. This will not be a simple wound re-closure surgery, this will be a much larger surgery to possibly replace a failed catheter.

The surgery to fix the incision on my spine was completed today, We got home not very long ago and noticed that the pump area on my belly is swelling, I also have a fever at this point. We have called the doctor and are waiting for a call back. This could result in having to go right back to the hospital. Updates will be given when possible.

The photo move is moving slower than expected due to the fact that my spasticity is out of control. To be honest I think we might be dealing with infection and baclofen leakage. I am way to spastic for the pump to be working at all.

The emergency surgery is scheduled for 1:00 PM tomorrow, We will likely be at the hospital for a while and will not be home till early evening. The countdown clock has been started and is on the front page.

Later tonight we will find out when we have to go to the hospital’s surgical sector for the emergency surgery to repair the reopened and infected Baclofen pump catheter insertion site that was likely damaged by the back of my wheelchair. RehabTech has my order on rush, and will begin processing it immediately tomorrow. If the wound fails to heal again after tomorrows surgery, RehabTech could be at risk of liability issues. I will update the site immediately when I get the update from the hospital. Currently the plan is same day release.

We have an emergency neurosurgical appointment tomorrow at the hospital with doctor O’leary. He may have to do minor surgery down in the out patient operative area which would involve washing the wound with antibiotics and also adding stitches, it all depends on what he sees. There is a slim chance he might admit me and do a regular surgery. We will find out tomorrow and I will update you tomorrow.

Alright, FInally RehabTech is going to be sending the insurance pre-authorization in tomorrow once I get a new justification for the back to them that includes the surgery site reopening and converting into pressure ulcer status, using that incident will guarantee coverage and get us rush processing hopefully. We really need this immediately, I told RehabTech that if there are extra charges for rush process or overnight shipping we will pay every penny, we absolutely need it so that I do not get meningitis from the surgical site reopening and converting to ulcer status

The move is now in progress. However I have decided that I am finally going to push myself to subtitle every single photo in my library. Please bear with me as this could take until tonight. Remember that the legacy system will be kept running without updates at http://alinssite.iguido.com/gallery

I will notify you all with a blog post when the new system is up and running and populated with photos.

You can probably expect it to be totally up and running by 9:00 PM

I was able to get my hands on a MobileMe activation code for only $45 dollars. This will allow our website to upgrade to a much nicer and more streamlined gallery system. The legacy system located at http://alinssite.iguido.com/gallery will be left running indefinitely though will not be updated anymore. All posts on the blog that contain links to the gallery will be re-routed to the new gallery system located at http://gallery.me.com/alin0steglinski Please note it will be empty until I get the photos in there. I will notify you all when that is done.

We are having a serious problem with my Baclofen pump surgery progress now. As you can see above the incision on my spine is swollen and red. We are going to contact the surgeon tomorrow the minute the office opens. Hopefully it is something that can easily be fixed by antibiotics or specialized wound dressing and care. We will find out tomorrow!

Someone who is not to be named donated a brand new 42” LCD HDTV to me today. We brought it home and hooked it up. Shown above is the picture of the first power on. THe TV is absolutely huge! I took pictures of the unboxing and everything. Click the image above to go to them.

We started working with rehabTECH on the 15th of july. They had prescriptions and orders for all of the parts a few days after that. They said they would go ahead and order them without ordering a technician to come evaluate me and my chair. Nope, a few weeks later we called for an update and they said no parts have been ordered nor has a pre-authorization been done because we didn’t have an evaluation on file from one of their rehab technicians. August 12th the technician came out and did an evaluation. I called today for a status update and the technician on the 13th handed in his papers to the account representative. I called today to get a status update, STILL nothing ordered! They apparently had a load of orders in front of mine for some reason when my order is obviously critical due to the fact I am getting pressure ulcers which are already stage one from the current back and cushion of my chair. They are allegedly going to submit to the insurance and everything tomorrow. They told me to call back on Monday for a status update. I will call on Monday and I expect some good news. I am absolutely sick of all the garbage I have been getting from these companies.

We have changed the back type to a non moulded back due to my dynamic spinal condition.

Two backdated blog posts have been made, both backdated to September 1st. These posts are the statistics posts.

Alins Site statistics August 08 statistics report released

DisabledPlanet statistics August 08 statistics report released

Patients at Advocate Lutheran General Childrens Hospital who are very frequently inpatients and at the Yacktman pavilion get the privilege of making a ceiling tile that will be displayed indefinitely in the Pediatric Inpatient Unit. Shown above is my tile. Me and my caretaker Andrea are working on painting the tile. There will be photos of it’s progress. Today we got the text painted completely. Watch for another update next week.

FIgures, anything that works well for my condition usually gets screwed up in some way. Due to the Baclofen pump being sensitive to vibration we have to send back The Vest system. I have not been able to use it since the spinal tap for the Baclofen pre-test. My lungs are definitely showing the degredation from the secretion build up. We have a follow up appointment with Dr. Aljadeff scheduled for a few weeks from now. There we will discuss alternative options for airway clearance.

Oops, after all this time people finally complain that I had never updated my Age on my About Me page. It is now updated!

In the last hour I have finally got around to making a Webclip icon for the iPhone and a Favicon for all modern browsers.

These two features add just a little bit of a cosmetic flare to the site. Here is what a Webclip looks like below when added to an Apple iPhone.

As you can see above when users of Apple iPhones select Add to Home Screen on their device’s this will show up, no more generic website screenshot! You get a nice icon for your home screen shown on the right! Cool eh!

Now for you people on the Desktop and Laptops and any other device that uses a conventional modern web browser, the Favicon! The favicon is designed to allow users to easily identify websites within a favorites list.

Shown here is a Favicon, It is the little A in the picture above. It’s merely an icon to represent my site in your lists.

If either of the above features are not working please Contact Me immediately!

I am finally up to making a long blog post. I have been sick all this time.

Tuesday August 26th at 10:00 AM I was wheeled out of the Pre-Op Unit and into the O.R hall. This time they took me to one of the biggest operating suites in the hospital, the biggest I have ever seen. It was a neurosurgery suite which had an MRI and X-Ray in the same room. There was also a giant surgical laser system. I began breathing N2O and then they introduced the IV anesthesia. I woke up in Post-Op Unit a few hours later. They had me intubated during the surgery due to my respiratory problems. They kept me in Post-Op for about four hours using the Post-Op Unit as a Surgical Intensive Care Unit since the Pediatric Surgical Intensive Care Unit was full to the gills. On Thursday night I began having vomiting spells when they tried to resume my G-Tube feedings. This continued until sunday and slowed down enough to let them get some food into me. Sunday night the 31st, around 4:00 PM we discharged and began to drive home. It was a hot and humid day and the motion of the car combined with the hear tmade me puke again. We blamed it on carsickness and continued to drive home. Later on Sunday night we began feeding water into my G-Tube at 25 ml/hr which was successfully fed overnight. This morning I decided to gamble and push it to 30 then to 35 then to 40. We then stopped the water and started infusing my G-Tube feeding formula at a slow rate and I kept bumping it up till I hit 50, exactly 10 ml/hr below my regular rate. I will probably kick up the last 10 ml/hr tomorrow. I will keep you all updated.

Watch out for a short video in the Youtube page!